Tag: goal

So, I think I’m finally starting to get the hang of this PoTS thing. For the first time in ages I finally feel like I’m recovering and I definitely think that this is down to the exercise I’m able to do now. I honestly can’t believe how much more active I can be now; I’ve not used my wheelchair or commode for over a month.
I’m so relieved to be able to say goodbye to the wheelchair. I know I have it if I ever need it again and it’s been such a help, allowing me to carry on with life and get out and about, but I’m certainly not missing it! I’m also able to cycle on my exercise bike for half an hour most days which feels pretty amazing!

The big news though is that earlier this week I managed my first run since last November. I say run, I’m sure most people could walk faster if I’m honest. It was harder than any run I’ve done before and very slow; I didn’t get very far, but at least it’s a start. My heart rate went sky high but thankfully recovered after half an hour or so of lying down drinking water by the pint! I’ve had to tailor my exercise regime around when my highest dose of Ivabradine is due so that I’m getting maximum benefit from my medication.

I’m feeling so much better at the moment which I’m putting down to the fact that I’ve been able to increase the amount of exercise I do. I feel almost human again! I’m mainly only struggling with the extreme fatigue, lack of appetite and nausea and I had a pretty bad bank holiday Monday as I woke up vomiting but I didn’t feel too unwell after so can’t really complain.

I’ve not written in a while because the last fortnight has passed in a blur. I woke up the day after my last blog post and madly decided to take the next step: exercise! I have seen research that claims exercise is the single best thing you can do to manage PoTS symptoms, but knew this would be impossible to start without the help of drugs to allow me to tolerate exercise.

As I was now on medication I decided the time was right and it felt good to unpack all my old running gear (yes I still hadn’t unpacked them from when we moved house!). I’ve started on an exercise bike because I can sit down and go as slow as I want. I’m not going to see the benefits for months yet, so it will be worth it in the long term, although realistically in the short term it’s leaving me worse off. 5 mins on the exercise bike is leaving me in bed for the rest of the day!

My eventual aim to to be able to run again but the eight month plan I downloaded from the dysautonomia international website for PoTS patients advises to wait until month 5 at least before starting upright exercise. It feels good to have something to work towards though, and it feels like I’m achieving something positive.